An Australian boy's fight against Neuroblastoma, a lethal childhood cancer

Saturday, August 27, 2011

Hurricane Irene

Just a quick update, as we prepare to go through our first hurricane! As you know, hurricane Irene is headed straight for NYC. I spent yesterday amongst panic shoppers, trying to get supplies. The supermarket shelves were almost bare, all the water & bread gone. The lines were out the door! At the hardware the line was around the block and stores are bare of flashlights, batteries and candles. I managed to get candles at least and we have 3 flashlights and batteries. We are not so worried about damage in our location, however flooding and power loss is almost 100% guaranteed. We are in a flood zone where we live, but we are not in an evacuation zone. We are a block away from non flood risk areas at least. We will remain in our apartment, which is unfortunately at ground level, so we could be in trouble if the East river floods...the East river is at the end of our street. Tim has to work at the building that he works at, so it will be me and the kids, along with Bear and a foster dog we have, that will brave the hurricane and seek shelter away from the windows. We don't think the windows will blow out but there is risk of them being smashed by debris. There is a park opposite us with trees that may fall and construction directly opposite us with things that could potentially end up through our windows...if this happens then high wind and rain will come streaming in and ruin electrics and everything we own...this is my biggest fear. We already lost just about everything when we sold our home in Australia, and now we could loose it all over again, without money to replace things. I went to work this morning and in between seeing clients pets, we had to clean the back outdoor area in the rain, so that the drains hopefully have a better chance of saving the basement from flood. By the time I finished work, the public transport system had totally shut down and will remain shut down until after the hurricane has come through. The subways have a high chance of flooding and it may be a long period before it can run again. The power company is going to shut off the power if water leaks into the underground mains. I saw many things on my way home that will likely be a problem, such as all the garbage street cans are full,I guess sanitation has shut down too, this means the garbage will clog the drains, they are also not bolted down so they may hurl in the air into business windows. I also saw plants and chairs on balconies and window air-conditioners that are not secure. Water may be shut down too, this means no toilet to flush and no water for the dogs to drink. I managed to get 2 gallons but that's all we have. We will fill the bath tub and sinks up later tonight as back up and fill empty soda bottles. Irene has already killed many people in it's path, let's pray NYC is as prepared as they say they are. A lot of people are brushing off the warnings..."it's just media hype making it sound worse" " Ah it will just be a lot of rain and some wind, people are panicking for nothing" these comments worry me, because what if it's worse than these people think, are they prepared? With no power we have no elevators for the people who live 50+ floors up, atm's won't work, no internet, can't charge your cell phone, freezer and fridge issues for homes and businesses, the list goes on.

The biggest disappointment is that my best friend Jenni and her daughter who I have not seen in 7 years just landed in LA and is stuck there because of course all the New York airports are closed. They are headed to a hotel as I make this update. Her airline only flies to JFK and that airport will be flooded for a long period. At this stage they are telling her that it will be a week before she can get to NY. The other airlines are selling tickets fast and the prices are insane. We were going to spend my birthday together for the first time in 7 years, but now it looks like she will miss it. I also took next week off work to spend with them but it will now be wasted :( I can't believe a hurricane is coming to NYC, it's such a rare occurrence! Poor Jenni, she never travels and I remember how scary it can be when your not familiar with traveling overseas, I can't believe this is happening!Wish us luck, hurricane Irene will be here very soon.

On a happy note, the humanized antibodies are here! MSKCC started the study this week and I believe 2 patients have started. I am waiting to hear from Dr Modak as to when Dylan can start. We know there are a lot of children who are not as fortunate as Dylan, who remains stable, therefore we are happy to stand back and not pressure the team to get Dylan started yet. My only concern is that the study doesn't close before he gets on, but I know in my heart that Dr Modak would not let that happen. Dylan has been first for a lot of studies, this time we will see the effects on the ones who started this week, be that side effects and disease response. The humanized antibodies sound very promising, I have never heard the team so excited about a new study. Here is a copy of what the head of the Neuroblastoma team at MSKCC had to say, from Dr Cheung

Dear BOP:

As you have probably heard, we finally got the green light from the FDA.The first ever humanized form of antibody 3F8 is going to be given to neuroblastoma patients starting this week, having gone through all the hurdles, many unforeseen.I want to thank you all for this unprecedented grass root idea, your tireless effort and generosity, and above all, your faith in our ability to get this done.Our hu3F8 is one of the very few drugs specifically made for treating neuroblastoma patients in the history of medicine.We are proud of this enormous effort which will not be possible without your partnership.Words cannot describe the excitement of our clinical and research teams, and hope you will pray for its success, as we all do.